Freddie’s Story
Freddie and me in 2019 - babies!
Freddie and I met at university in 2016. Since 2022, Freddie has had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This cruel condition has seen Freddie deteriorate from a healthy 24-year-old to being completely bed-bound. In early 2024 he even had to spend seven weeks in hospital.
Now back at home, where he is cared for by his incredible family and a team of nurses, he continues to have very severe ME/CFS. He can handle only minimal stimulation of any kind. Speaking, seeing, hearing, and being touched are tiring exertions that can be painful. He lies in a dark room, wearing an eye mask and headphones to minimise his exposure to light and sound. He’s barely able to speak. He communicates by making a clicking noise in answer to a series of yes-or-no questions he developed (for example: “are you thirsty?”, “are you too hot?”). He’s in constant pain. Freddie has been in that condition for over two years.
I saw Freddie in January 2024, shortly before he went into hospital. It was just before I moved to Sydney. At that time he was still talking. He said that if I wasn’t moving away he wouldn’t have seen me because it was taxing for him. In the six hours I was at his house, we had four three-minute conversations. Since February 2024, when Freddie went into hospital, I have had no communication whatsoever with my best friend.
During my rather regrettable long hair phase.
I visited Freddie’s family when I was back in the UK in June 2024 and June 2025. Both times, Freddie wasn’t aware that I was there. I was able to stand in his room and look at him. I had to be silent. Seeing him lying motionless in his dark room with his headphones and eye mask on, and thinking about what he was going through, and how long he had been suffering, was deeply emotional.
ME/CFS is an often misunderstood, or simply unknown, condition, despite its afflicting an estimated 500,000 people in Australia and at least 404,000 people in the UK (in addition to 950,000 people with long COVID, who could meet the diagnostic criteria for ME/CFS).
I knew nothing about ME/CFS before it affected Freddie. The general perception, I think, is that ‘chronic fatigue’ means being tired all the time. That is what I thought it meant. I am still far from an expert but, as Freddie’s condition deteriorated, I have learned how devastating ME/CFS is.
What Freddie is experiencing is tragic and horrendous. It is unimaginable what his family, who continue to be utterly amazing, are going through. For those of us close to Freddie, it has been extremely difficult. The sadness and sense of loss are profound.
Freddie and I used to host a Christmas dinner for our friends every year.
Inspired by Freddie and his family, I would like to do what I can to raise awareness for ME/CFS. In 2025, I ran eight marathons - one in each Australian state and territory - raising funds for the ME Association (in the UK) and ME/CFS Australia. I donate 10% of every print sale to the same fundraiser, which is currently just over £19,000 and I would love to get it to £20,000 before I close it. There is much more that I would like to do to raise awareness for this horrible and little-known condition.
The fundraiser can be found here: ‘Eight for a Mate: The ME/CFS Marathons Challenge’
You can read more about how donations from prints work here: ‘How Print Sales Support ME/CFS’.
If you’ve read all of this, thank you so much. I appreciate it enormously. Just by reading you are helping to raise awareness. Thank you.
Freddie, I miss you.
